MS is not something an individual gets; it's something a family gets

This past week, my mom, sister and I talked with the board of a company in an effort to receive funding for MS family programs. Originally, I was the only one asked to speak, as I am the one with MS. I shared my story and answered the questions they had. However, they were just as interested in hearing my older sister's and my mom's stories. My older sister, Jessica, is "the healthy child" of the family. My younger brother is developmentally delayed, and I have MS. Jessica is healthy. Although she is not "sick," she is the one who watches me struggle getting to school, maintaining friendships, and often, just lying in bed - too fatigued to get up.

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In the same way, my mom is also "the healthy one" of the family. She is constantly caring for the rest of us. Sure, she's a mom, and that's what moms do, but she does so much more. She calls doctors, schedules appointments, drives me to school, picks me up when I get too tired, and she still manages to stay sane.

In many ways, MS is a family disease. Chronic illnesses seem to have a way of involving many more than just the “afflicted.” In fact, we have adopted new titles in our family (with the help of the MS Society)…we are Care Partners! Instead of the usual Caregiver title, we have all become partners in our journey through MS.

How does this work? MS certainly has its quirky “issues” that require special care; there is no doubt about that. However, when you look at a family like mine, it is pretty obvious that we ALL have different needs at different times. Even though my dad and I have the disease, there are times when my mom gets a bad cold or is really tired from her responsibilities around home. My sister is in college and is becoming more and more independent, but there are days when she needs extra care when working through some of those struggles. You see, everyone has something in their lives. It may not be a chronic illness, but we all need each other. The dance we do in a family is to try to not be the neediest one at the same time as anyone else!

Our family has always tried to keep things in perspective with humor. For example, my dad gets really “twitchy” with muscle spasms in his legs, when he is tired. It is always worse as he is just about to fall asleep. Sometimes, his twitching is so extreme, he will shake the whole bed and give a little yelp of pain. This action is so unexpected, it often makes my mom’s heart stop for an instant, out of shock! Knowing this is not something that is controllable by him, my mom tried to keep things light by calling him a “jerk” - that’s what he’s doing - jerking the bed. It is a way to smile through something that can be uncomfortable for them both.

We stay on the alert for things like that which we can turn around to be more positive. I like that about our family. It certainly makes it harder for the ugliness of the disease to be as big as it would like itself to be. It also gives our family a sense of ownership of the issues we face. By laughing at them, we are reducing their impact and finding ways to muddle through the inconvenience they provide.

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Our life as a family has certainly been a thing of change. We have learned to “roll with it” as new things seem to pop up each week. However, we have remained committed to working together and finding our new norm as the needs present themselves.

This week, we are on vacation on a little remote island in northern Wisconsin. I grew up vacationing here at my grandparent’s home. Eight years ago, they sold their home, and, through a series of events, they are now living in a nursing home, far from their beloved island. We have been visiting with their long-time friends, seeing sights I only vaguely remember from my younger days, and coming to terms with being on the island without my grandma and grandpa. I really miss them being on the island with us. They are getting older (92 & 86) and will not be around forever, but the memory of them here is alive and young and happy. We are making new memories in this beautiful place, and we have the privilege of the memories from our past. Life is like that, I guess. The hope is to have good memories to look back on, but to also keep creating new ones to sustain us. MS has made life challenging, at times, but it has also given us the blessing of a family focus. We work hard to keep things in perspective each day and to find new and creative ways to work through daily challenges. Sometimes it means we have to work harder - that is for sure! However, we find ways to do it as a team, and that makes all the difference.